Rob Whan

My initiation into the childhood cancer community began August 10, 2007 with the words no parent should have to hear… “Your son has Leukemia”. My only son, Caleb, was 3 years old and diagnosed with Hypodyploid Leukemia which is very high risk, with only about a 15% success rate. The treatment that was offered failed my son. Caleb passed just 11 short days after his 4th birthday (3-28-08).

My wife, Monique and I continue the fight against childhood cancer. We were hurled into the fight of OUR life to save our son from cancer. Our instincts, as parents, is to be vigilant against this damning disease that steals our children of their future and we do not want any other parents to have to walk in our shoes.

We quickly founded, Caleb’s Crusade, a 501(c)3. We are dedicated to directly fund local families aiding in the financial challenges that come with having a child with cancer, we also aim to raise awareness for childhood cancer which includes advocating for children with cancer both locally and in our nations capitol. We are particularly tenacious in making sure children have a voice in the competition for research dollars, and we won’t give up until a cure is found.

State Coalitions Project: I am a founding member of the national advisory committee to establish State Coalitions throughout the country. This project has evolved out of a need for collaboration among the childhood cancer community. After multiple trips to Washington DC, with different groups, it was evident that there has to be a better way to have our voices be heard. I am passionate about our mission and how we will establish and duplicate statewide coalitions at a grassroots level to streamline the voice of the childhood cancer community. My son Caleb was silenced by death… I am only one voice but I will be heard! I hope that others will join me in the fight–we need your voice. www.statecoalitions.org

Family Advisory Counsel: I am in the process of researching pediatric centers of excellence in Patient and Family Center Care. I plan to document the best of these programs and present a model that we can duplicate here at our local hospital. The need for additional resources were evident in our journey with Caleb and we still (5 years later) routinely learn of other foundations that offer resources that would be a benefit to our families here at home. The end goal is to pair every patients family with a family navigator that educates and answers as many questions as possible for our families. This will facilitate a relationship that will define the needs of every family and connect them with the appropriate resources to ease the many burdens that they encounter when they are thrown into this unfathomable situation.

Legislative Advocacy: I am a member of a working group that focuses on implementation of initiatives that will address the issues of the day. The challenges that childhood cancer face are multifold and complex. The primary issues are those that stand in the way of research. Currently we are focusing on increasing federal funding through the NIH and NCI and aim to change the model for funding which only grants $200 million or less than 4% of the budget to childhood cancer research. The estimated $200 million is what keeps the research going. If the researchers do not get that amount or more this translates to stopping clinical trials. Most of our kids are treated on these trials, therefore, if the money is not there the trials will cease…this means kids die. childhood cancer and rare diseases do not get the private sector monies like most adult disease because the financial return on investment (profits). In prevalent adult cancers private sector (drug development) accounts for approximately 70% of the medical breakthroughs. Our kids do not have the private sector safety net like other causes do. We are left to rely solely on the government for funding. We are now focusing on the FDA process and trying to implement new ideas to incentivize drug development for smaller populations. Other challenges include: creating a public/private environment to fund research, centralized bio-banks to have samples to study, incidence tracking system and data management, survivorship tracking, and insurance disparages.